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Happy New Year ❤️

Id like discuss topics about rare combination Cardiac Amyloidos and Multiple Myeloma

  1. Hi, !

    I am sorry I didn't see your poster earlier, but I am glad to jump in here with my two cents. One of my grandmothers had Multiple Myeloma, so I have some familiarity with the condition. Eventually, it did take her life, but I know people can live with Multiple Myeloma for years and even sometimes acheive a remission of sorts. She passed away in 2001 and I know improvements have been made since then. We actually have a sister site dedicated to blood cancers, including Multiple Myeloma. I thought you might appreciate this piece from the blood cancer site (there are a number of member comments following the piece as well) -- https://blood-cancer.com/living/status-awareness-privacy. We also just launched a site dedicated to ATTR, including cardiac amyloidosis. (I promise we don't have health sites for every health condition under the sun, but we have been actively trying to expand out sites for rare or lesser understood conditions). You are welcome to check it out -- https://attr-amyloidosis.net/ . I have to admit that my knowledge of cardiac amyloidosis is quite limited, so I am not much help in that area. What specific things were you wanting to discuss about both conditions? Treatment? Quality of Life? Finding good medical care? I haven't come across people living with both conditions and though there seems to be some potential treatment overlap (chemo), I don't even know how doctors would proceed with a treatment plan for both conditions. Are you the one living with them? If so, how are you doing?

    I know my reply probably wasn't the most helpful, but I do look forward to discussing this further with you, if I think I can be of any assistance (or just be a listening ear if you need to vent).

    Best, Erin, Team Member.

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